My diagnosis

Every Coeliac has their own anecdote about getting diagnosed and of (hopefully) getting better afterwards. I’ve been gluten free since February 2012 and the symptoms stuck around for a long time then went away and currently come back at random intervals! But here I am, figuring it all out, so welcome to my page.

I’m no expert, all we can do is educate ourselves as much as possible and try to take responsibility for our own health. Ultimately no one else can do it for us.

I have no idea when I first developed coeliac but I remember going to the doctor at fifteen from feeling sick the majority of the time, she weighed me and then called my mum and said I was underweight and might have an eating disorder. This was far off the mark, I had a healthy relationship with food but just felt so sick all the time and didn’t know why.

Maybe it’s just because I was a teenager but I was pretty anxious over the next few years and had days feeling depressed or completely out of control of my own emotions. Sounds like normal adolescence! But I do wonder if malnutrition caused from living with undiagnosed Coeliac disease caused these problems, which seems very likely in hindsight, particuarly with regards to the sickness feeling in my stomach which I assumed was just anxiety.

At 18, whilst I was at university in Cornwall, I was still suffering from feeling sick all the time, incredibly tired, stomach cramps, and just generally feeling like something was very wrong within myself. Furthermore I had an ongoing throat infection that felt like the same pain as swollen glands, it was a mystery but I later found out this was Candida overgrowth in the throat from malnutrition eating gluten.

A doctor offered me a blood test for coeliac, I had never heard of it before. But then I looked into what it actually meant and it suddenly all felt very daunting, living away from home for the first time and facing an endoscopy at a hospital on the opposite end of the country to home, knowing I’d have to make some serious changes to my life. But I did it, and it was fine and it felt good to know I could manage on my own. And I had some wonderful support from friends at university and from family afar, which makes all the difference.

Being gluten free seemed to sort me out emotionally, the anxiety decreased dramatically and I felt a lot less on edge, I settled into myself and had a new spring in my step – I can give the credit to being able to absorb nutrients from the new diet without gluten.

Other symptoms remained though and they got even worse one summer. Every day felt like a struggle against my damaged insides. But I didn’t let that stop me, I kept productive and kept DOING because otherwise I’d just be sitting feeling sorry for myself and I was determined not to let illness get the better of me.

I am extremely grateful for the NHS, some aspects of care which I have felt were fantastic. Personally, for this particular problem, I found natural health, alternative medicine, and a focus on nutrition and emotional wellbeing more useful than a trip to the doctors or gastroenterology specialists.

So, this blog will follow the ups and downs of sussing out coeliac disease and how to stay positive, because we just have to find a way that works for every individual and try to manage it the best we can.